We’re Witnessing a Health Data Explosion

How can the world’s largest medical library harness data to improve public health?

Guest post by Dana Casciotti, PhD, Public Health Policy Analyst

You don’t have to be a scientist or health professional to know that information is at the heart of every biomedical advancement and clinical decision. And it’s equally obvious that authoritative health information does not appear out of the blue. Medical knowledge emerges from a process that begins with basic research into how organisms work and ends with carefully tested determinations of what treatments work best for the symptoms, disorders, and diseases humans face.

Along this bench-to-bedside continuum from discovery to practice is the work of the National Library of Medicine. Since its creation, NLM has been committed to making its vast store of information available to the public, including lay individuals, communities, medical and public health professionals, and researchers. Our simple but important mission is to acquire, organize, disseminate, and preserve the biomedical knowledge of the world for the benefit of public health.

Let’s face it, though—there are challenges. Information access may be the first step to improving health outcomes, but we know that having access to information alone is not sufficient. Think of all those who continue to smoke cigarettes despite the Surgeon General’s warning about the dangers plainly stated on the package. Or story after story in the news about the benefits of exercise, passively taken in—and ignored—by the couch potato. Certainly other factors—social, behavioral, economic, and environmental—influence whether and to what extent individuals use health information.

Additionally, although the internet and social media have expanded access to health information and built meaningful communities around medical topics, those tools have also spread a disturbing amount of inaccurate information.

So, we have our work cut out.

From a public health perspective, I am interested in how NLM can foster new approaches to interpreting and using information so individuals can have more productive health care interactions and improved health decision-making. Along that bench-to-bedside continuum, I’m focused on the end, on what happens bedside, in the doctor’s office, or at the kitchen table as patients decide what to do.

Thanks to new apps and wearable devices, people can be more aware than ever about their own health data especially related to behaviors like diet, exercise, and sleep. In addition to personally collected information, there is a vast array of health data generated from various sources—Electronic Health Records, research studies, and insurance claims data, just to name a few, along with the newest kid on the block, the NIH Precision Medicine Initiative. Its All of Us program aims to build a national, large-scale research enterprise with one million or more volunteers to extend precision medicine to all diseases. Imagine the size and promise of that data!

So how can the Library capitalize on this data explosion? Can we facilitate data collection and use at the point-of-care in a way that is manageable—and actionable—for busy clinicians and often overwhelmed patients? How can we use health information technology to create links between health data and consumer health information? Can we guide people effectively to sources of actionable information tailored to them? Can we help individuals take greater ownership of and be more active in health decision-making?

These are the questions my colleagues and I are wrestling with now, and the answers will certainly build upon the promise of recent advancements in information science and data science, along with cultural shifts brought about through the open science and citizen science movements. If we can effectively channel the tsunami of personal data being generated by each of us every day, then maybe we can employ new strategies to engage the couch potato and continued smoker. NLM can continue to be the gold standard for information about health and medicine, and make sure the public can find and use us.

If so, we can positively impact health, both for the individual and for society at large.

Guest blogger Dana Casciotti, PhD, is a Public Health Policy Analyst at the National Library of Medicine. Dr. Casciotti has over 10 years of experience in the public health field working in academic, government, and nonprofit sectors. Her training has focused on behavioral and social factors related to health, especially cancer prevention and control, and health communication. Dr. Casciotti holds an MPH from the University of Pittsburgh and a PhD from the Johns Hopkins Bloomberg School of Public Health.